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Post surgery flare ends ten years of remission

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Ulcerative Colitis
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Posted 2/8/2018 5:20 PM (GMT -6)
After enjoying about ten years of remission, I had a laparoscopic-assisted vaginal hysterectomy Jan. 26 and it has put me into a flare. Not sure if it was the trauma of the surgery, possible antibiotics administered in the hospital, the narcotic painkiller (percoset), being constipated and impacted after surgery, or a combination of all of these things.

I have to say I'd forgotten how miserable this could be. And it's different this time around. Really struggling with hemmorhoids, urgency, bad cramping when I try to have a BM and very little coming out. Feels like all of the inflammation is in the rectum. I keep feeling like I need to go, but nothing much happens. This goes on all night. I'm exhausted. I start to drift off to sleep, then the pain/urgency wakes me up.

All of this time, I've been on sulfasalazine and was down to just two 500 mg pills per day as a barely there maintenance dose. I've upped my sulfasalazine and my doctor has added Uceris and a hydrocortisone rectal cream. I've only had three doses of Uceris so far; can't tell that it's doing much yet. I'm also having all kinds of issues getting the prescrip filled. Doc gave me some samples, but my insurance company has denied filling it. Even with a manufacturer's discount card, an 8-week supply would cost $1,000. Just crazy.

Anyway, I guess I'm looking for any advice or words of encouragement - particularly if anyone has had a post-op flare.

Thanks!
Posted 2/8/2018 6:50 PM (GMT -6)
I am sorry to see you back. I think you're on the right path with the options you're trying. It's all relatively mild options, you could hit it much harder with prednisone, or even steroid enemas if it comes to that. I think I would definitely add enemas if I were in your shoes, mesalamine for sure, but I would also consider Uceris foam, steroid enemas or cortifoam. There are a lot of options for you & am I sure you will get it under control quickly. it sounds like you've responded well to medication in the past, and you were stable on low doses, try not to worry, but you do need to be patient. Have you had stool tests to check for c diff and pathogens? Antibiotics and hospital stays can make you susceptible to these things.
Posted 2/8/2018 7:59 PM (GMT -6)
So sorry to hear. Hopefully you can get this back under control asap. I would hit it with major rectals--Rowasa (mesalamine enemas) and Cortifoam (especially if Uceris foam is a problem with your insurance company) One in the morning (Cortifoam) and Rowasa at night. You could even throw in a Canasa if needed. Hit it hard and hopefully you will be back to a nice long remission.
B
Posted 2/8/2018 9:29 PM (GMT -6)
I hate to hear this surgery spurred your flare. I’m looking at another surgery soon. An oophrectomy. It will be my 4th surgery since my FMT in 2012 and I have stayed in remission. Do you take VSL#3 DS? I would see about taking it if not. And perhaps ask for a Calprotectin test to look for inflammation.
Posted 2/8/2018 10:45 PM (GMT -6)
Thanks for your responses.

notsosicklygirl: Yes, my doc suspected some sort of infection following my overnight hospital stay, but tests came back normal. I liked the idea of Uceris targeting the colon and it's supposedly a good choice for people who have been in remission for a long time and suddenly flare, but it's sure not giving me any relief yet. And there's the whole issue of my insurance denying coverage and battling that. No way I'm going to pay $1,000 out of pocket. Maybe I should ask for good ol' prednisone after all. Also, my doc prescribed proctofoam, but again, insurance didn't want to cover, so I ended up with the hydrocortisone cream.

@LoLil: I take an OTC probiotic and switch brands periodically. Not sure how much it's helping.

My biggest problem is the sudden cramping, feeling of urgency that crops up constantly. Run to the bathroom, gut wrenches, very little comes out. Straining makes the hemmorhoids worse, bleeding starts. I can't get any sleep and I'm exhausted. Then I worry that I'm getting blocked up or impacted again. Of course, all the gut wrenching is really making my surgical area hurt, too. I guess I need to call my doctor's nurse again tomorrow and see if I need to try some of the other options you all have mentioned.
Posted 2/10/2018 8:21 PM (GMT -6)
Sorry you're having a relapse, Princesa, but thanks for updating us. Cortifoam is usually very helpful with issues in the rectum, such as urgency. The constipation could be worsened by Percoset. Be sure to stay well-hydrated and try some steamed sweet potato/yam mashed to help relieve C. I needed an open TAH in 2015 & could not get back on my oral UC med at regular dose for over a week due to monumentally upset stomach from the antibiotics, anti-clotting, anesthetic, & all the other crappy IV & injected drugs given to me during 4 days in-patient; then I managed to build back up to the full dose from 1/2 just in time to avoid a flare. You need to rest as much as possible & and take good care of yourself for the coming month so that your body recovers from the surgery trauma. Don't forget: your hormone levels will be readjusting, too. / Old Hat (37 yrs with left-sided UC; presently in remission taking brandname Colazal)
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